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CTF Resources on Coping With Hearing Loss

By February 28, 2023January 19th, 2024Awareness, NF2-SWN

Communication is a meaningful exchange of information between two or more living creatures. In NF2-related schwannomatosis (NF2-SWN), when there is hearing loss or speech difficulties, it can profoundly impact your relationships and social interactions.

Developing nonverbal communication can really help with decreasing the isolation and making you feel more present in terms of the conversation. There are technological advances that might assist individuals with NF2 in hearing. These include an auditory brain implant (ABI), cochlear implant (CI) and a number of apps for mobile devices that offer incredibly accurate transcriptions.

The Children’s Tumor Foundation has sponsored a number of helpful webinars and panels to help patients living with NF2-SWN cope with hearing loss. Please click the links below to watch these informative conversations by experts and patients.

NF Summit 2023: Resources for Hearing Loss

 

NOTE: The sessions below were recorded prior to the 2022 renaming of “neurofibromatosis type 2” to NF2-related schwannomatosis, but contain valuable information and personal stories regarding hearing loss related to NF2-SWN. 

 

NF Summit 2022: Hearing Preservation & Restoration, the Landscape
A medical vs. surgical approach to preserving and restoring hearing in NF2-affected adults. Speakers: Jaishri Blakeley, MD; Francis Creighton, MD
https://youtu.be/oDXq3gP1YJA

Tumor Talk – Hearing Loss
NF2 patient McKinnon Galloway talks with Laura Barbieri about life with NF2, hearing loss, work, dating,  and how they each navigate their NF2 diagnosis and hearing loss.
Part 1: https://youtu.be/xKPrFiFS4bM
Part 2: https://youtu.be/WqfgJWFrbZM
Part 3: https://youtu.be/E3NqmKlFMWI

NF Summit 2022: Communication Technology in NF2 Panel
The ability to be understood is vital to building community. Hear from experts in the field on the latest in communication technology and how it supports deaf and hard of hearing people.
https://youtu.be/2GyWn8kcypE

NF Forum 2015: Adapting to Hearing Loss
Matt Hay and Ana-Maria Vranceanu, PhD share their insights about adapting to hearing loss. Thie presentation is from the Children’s Tumor Foundation 2015 NF Forum.
https://youtu.be/1wK7-quh8Lk

NF Forum 2016: Communications Options for Hearing Loss
David H. Jung, MD, PhD  presents on communication options for hearing loss at the 2016 Children’s Tumor Foundation NF Forum.
https://youtu.be/butJZsZJqK0